Are disabled children being denied their right to an education?

May and I appear in The Independent today defending disabled children’s right to early years education. The article takes much from the speech I gave in Parliament, and thus the reason why I didn’t publish the speech earlier.

Are disabled children being refused the right to an early years education?

Five years ago, I stood in the reception of our local primary. Rated “outstanding” by Ofsted, I hoped they would take my daughter into their attached Sure Start nursery. They not only refused to take her, they refused even to show us around. My daughter was one year old with gorgeous rolls of podge and an infectious laugh. She was also disabled.

According to the Department for Work and Pensions, there are 800,000 families in the UK with a disabled child. But research by the Papworth Trust has revealed that only 16 per cent of women with disabled children can return to work – and even then only 3 per cent full-time – compared to 61 per cent of mothers who don’t have disabled children.

These children are being refused the right to an early years education and, as a result, their mothers are being denied their basic right to work and provide for their families.

When my daughter, May, was born severely disabled I wouldn’t have called myself lucky. I would now. Unlike 84 per cent of women like me, I wasn’t forced out of my job.

Five years ago, I wrote about my daughter for The Independent. “May is a delightful baby… she is an absolute pleasure. She remains unaware of the dire predictions for her future. Rather than lie in her cot, totally unresponsive, she took up Olympic-level bouncing and gorgeous squeals of pleasure at the sound of birdsong.”

Naively, I thought other people would see her potential, too. In the end, we had the demoralising experience of more than 50 nurseries and childminders refusing to take her. There is no statutory requirement for even state providers of childcare to take disabled children, so they had no issue turning us away.

The primary that refused to show us around advertised that they prioritised special needs for admission. I asked for a copy of this admission policy but they admitted there wasn’t one. They made us jump through hoops for months and then, when pressed, told us prioritising May would be “unfair on other parents”. As an “outstanding” school, they made the outrageous claim that May only needed to attend nursery so I could work, not for any developmental benefit.

Finally, May was accepted at another nursery. Then, a month before I was meant to return to work, that nursery pretended they hadn’t accepted her. They put her on a waiting list that we later discovered didn’t exist. She was the only one on it and she never came off.

I can remember days on the phone sobbing, as I literally begged nurseries to take her so that I wouldn’t lose my job.

When I spoke to my local council about it, they treated my return to work as frivolous. In contrast to endless political rhetoric about how mothers should return to work, these Government officials fought us every step of the way. They discouraged me and called returning to work a “lifestyle choice” as opposed to the economic imperative it felt like to us. Earlier this month, I participated in a Parliamentary Inquiry into childcare for disabled children chaired by the MPs Pat Glass and Robert Buckland. There, I heard stories from mothers across the country whose children were also denied their basic right to an early years education.

Every three-year-old across the county is entitled to 15 hours of free childcare a week. In case after case, disabled children are denied this because the funding allotted doesn’t cover the extra costs.

Children such as May are expensive. They need more supervision, training for staff, equipment and even changes to the infrastructure of buildings. When Government funding is made available, it isn’t ring-fenced and nurseries and families are aware that it can be snatched away in a second.

The charity Contact a Family recently published research based on over 2,000 families with disabled children. Again and again, they heard from parents who said nurseries refuse to take these children unless parents cover the difference in cost; 82 per cent of parents surveyed paid significantly more towards childcare with over a third paying eight times more.

In our case, we paid £400 a month more than other families in the area.

But we were lucky. We had childcare. And then, only a month after May started, our local council sent this brief email to the nursery: “Unfortunately there is no budget now to pay for 1.1 support. Sorry!” With immediate effect, it cut May’s one-on-one care. The nursery could not supervise May safely without this funding, and we couldn’t afford the difference. I would have to quit my job.

Weeks of fighting, including an inquiry by our local councillor, forced its reinstatement. But soon after, the council sent an email to every nursery and primary school in the borough stating that it “will only be able to offer advice and guidance not 1:1 support, equipment or childcare” for any new case of a child under six with a disability or medical need.

At the Parliamentary Inquiry, I met Katherine Kowalski who had lived a few streets away from me when her son, who is two years younger than May, was born. Despite her son’s complex medical needs, he was refused the very funding that we fought so hard for. Her family was forced to sell their home and move across the country to access childcare so that she could continue to work.

And yet, keeping our jobs is only one aspect of why childcare is important. For children, the benefit is enormous. At nursery, May interacted with other children in a stimulating environment led by experts in early years education. Previously, such situations had caused her severe anxiety. Moreover, she learned the basics, such as how to eat from a spoon.

It shows how shortsighted not funding these children is. May is no longer tube-fed – depending on the Government to provide specialised liquid meals, surgeries to insert the tube, endless NHS visits over infections and the lack of a normal diet.

Nursery taught her to eat from a spoon and, now, May’s eating will cost our country nothing. For the rest of her life.

The most unexpected benefit was not for May at all. The nursery called caring for her a “privilege”. Parents told me that their children came home singing songs about May. Children rushed to her side cheering when I wheeled her into the room. They brought her toys and turned the toys on when she couldn’t do it herself.

Is this not a basic value of human decency that we want to instill in our youth? May attends a special-needs primary now. Nursery is the last chance for our children to fully engage with a severely disabled child.

Last week, I phoned the same “outstanding” primary that wouldn’t even show us around. They continue to advertise that they prioritise special-needs cases. I explained that my daughter was disabled as if she were still that baby, five years ago. Their admissions policy had not changed in the slightest – meaning, there was no policy. But they did attempt to reassure me. There was no need for a policy; as long as they felt they could accommodate her needs, my daughter could probably attend.

How can a state-run nursery, housed in a completely accessible new-build school, be rated “outstanding” by Ofsted if it can’t accommodate a disabled child?

The children at nursery loved May. Well, I love May, too. But it is not enough that she had access to childcare. All our children deserve that kind of affection and stimulation.

7 Comments

Amy SanderJuly 5, 2014

You are so inspiring. Of course disabled children should get preschool (and higher school). No questions asked. These are people and we must take care of them regardless of ability or disability. I admire you so much. Keep fighting! You are making such a difference for so many families.

our story of childcare fight is so similar to ours. We paid £1500 instead of £500 a month for childcare with1-2-1. We were made to feel that we were being unreasonable and doesn’t our son’s DLA cover the costs!!!!!!! If you need any more examples of this ridiculous situation please feel free to contact us xxxx

[Comment reply from Llinos – went to SPAM so I copied it in.]
Thank you for your kind comment.
To be honest we lurch from one thing to another and when we think we are coping Fate throws us a curveball. We just accept that this is our shot on life and make such we are living it not just getting by!!
We fought so hard for childcare and it just got to a point when we were told a point blank no. Only for my husband to give up work and a month later to be told we could have it….!!!!! If childcare was more accessible then more parents would work. We were made to feel like we were being unreasonable. When I asked Social Services what other families do I was advised that they don’t . So more families slip below poverty line and struggle!!!
We will never let Llew’s disability limit him or us.
Sorry rant over.
I hope you and your family are well xxxx

I can feel what you must’ve gone through. It is such a vicious circle out there when on one hand the government wants
our kids to be independent and yet don’t provide them with the facilities to make that happen. I am from India and I thought such struggles were only part of developing nations but I can see that in almost all the countries, the struggles are endless, their names may be different but the parents just don’t have it easy. Hayley Goleniowska suggested your article to me. I am thankful